Chris' journey to end his multiple sclerosis by undergoing a hematopoietic stem cell transplantation at the Ottawa General Hosptial. This blog will show his entire treatment and all the highs and lows along the way.

Pages

Tuesday, March 29, 2011

A lot has changed over the last month, especially in terms of Chris' health.
﻿

Since I am his wife I might be biased, but I think
Chris is looking pretty good! Look at that hair!

﻿

After having such a positive appointment last month, Chris went back to work on March 7 (less than three months after his transplant). Since his doctor recommended that he take a graduated approach, Chris worked three days that week, four the following week and then worked a full week last week. Really, looking back, we figure that Chris could have just gone back full-time. He has never really felt that tired (no more than usual after a work day) and has been able to jump right back into things.

A lot of his clients (Chris works in engineering) didn't know that he had been on a leave of absence. Since the majority of Chris' construction projects take place in the spring and summer, it is not uncommon for Chris not to meet with anyone during the winter. On his first week back he met with one of his main clients and they commented on his lack of hair by asking if Chris had lost a bet. I am assuming this because they had no idea what Chris had been through and thought his buzz cut had been a personal choice. The protective wife in me, however, would like to give them a hard time for being so insensitive. I think he looks pretty cute.

Chris is still working out, but has slowed it down a bit since his knee started to hurt him. He was up to doing 80 minutes on the elliptical, but is only doing weights until his knee is back to normal. The knee that hurts is, of course, his left knee (the leg that was affected by his MS).

On Sunday, Chris went in for his monthly IVIG treatment and since his regular BMT appointment was today, they ended up doing some blood work, so that we would have his results for his appointment.

Despite feeling better, Chris' bloodwork through us for a loop. We had already been told that they were going to discharge Chris from the BMT program and send him to the MS clinic. However, when they went to check his bloodwork the whole computer screen was full of red numbers. All of Chris' counts were MUCH lower:

White blood cells: 2.1 (normal 4.3 -10.8)
Platelets: 77 (normal 150-450)
And then remember that we stopped listing his neutrophils because they were so high that it didn't matter, well they had crashed down to 0.8 (1.8 -7). Chris wasn't allowed to leave the hospital until they were 0.5.
So needless to say we were a little concerned at first.

They retested Chris' blood again today and his white blood cells and platelets were higher than Sunday (3.5 and 85) and we are still waiting to get his neutrophil count, which will have likely risen too.

His doctors weren't 100 per cent sure why his counts were low. The one explanation is Chris had a mild allergic reaction to my paren't dog when we went to visit last weekend, and if he had any inflammation his body could have attacked and caused a drop in his counts. But since they aren't sure and Chris' counts are still low, we did not get to leave the BMT program and will need to wait to transfer to MS clinic.

The main reason we wanted Chris to be transferred to MS clinic is that we are really excited for him to have an MRI, so that we can see if there are any early signs of it working. Chris had an MRI of his head right after of the transplant when they were concerned he might have a brain infection, so we will really be able to see if anything has progressed since the transplant. While Chris has not had any visible relapses, it is nice to have the proof that this procedure was really worth it.

In other news, there have been a couple of exciting announcements in MS research that we thought we would share for those who are interested:

- The first oral MS treatment, Gilenya, has been approved in Canada. While not a cure, this is a disease-modifying drug that has been shown to reduce the relapses by 54 per cent. While Chris is no longer on any treatment plan, this news is really exciting for MS patients that require and respond to disease-modifying treatments as I remember how much Chris hated taking three needles a week.

Chris' doctors are still working on their report on their clinical trial. While Chris will not be included in the report, he did undergo the identical protocol, so we are really interested to see the report (and will be posting it on here!) to see how successful it was for everyone else.

It will also likely get more publicity for this procedure, which I think has gone under the radar. It wasn't until we were desperately searching the Internet that we find out about this procedure and even then, it was not clear that this was an option for Chris. There has been a lot of media coverage on the CCSVI procedure, so it would be great if this procedure became more well known to allow MS patients to understand their options

Tuesday, March 1, 2011

A lot has happend since our last post. Chris had his third IVIG treatment on Sunday and had his blood tested again (White Blood Cells was 5.1!). We also hit a huge milestone on Sunday: 10,000 hits on our blog from over 20 countries!

Today was Chris' monthly check up and it went exceptionally well. As you can see, Chris is still recovering really fast (the last two photos are less than two weeks apart!).

In fact, he was approved to go back to work next week, which is WAY ahead of schedule. His doctor told us that transplant patients usually require three to six months before returning back to work, with most patients taking closer to six months to be ready. However, she really looked impressed when Chris told her that he was working out on the elliptical for an hour each day and lifting weights. She assured us that as long as Chris was feeling up to it, there was no health risk for Chris going back to work this early.

However, while Chris is feeling much better, he did get a little push last week in the form of a letter from SunLife Financial. Chris was denied long-term disability covereage due to a condition we didn't know about in their policy. Chris' work changed their coverage on long-term disability last June. SunLife Financial has a pre-existing condition that once an employee gets long-term disability coverage, they need to have a 13 week period in the first year when they do not require medical treatment.

Well Chris had an appointment to get information about the transplant in July, which was 12 weeks and 4 days before he started the procedure. Even though Chris wasn't "treated" for anything at the time, SunLife Financial includes all physican consultations as treatments and denied Chris coverage. It was definetly a set back, but luckily Chris was close to the point that going back to work was a possibility. In the meantime, Chris is working on writing an "I hate SunLife Financial" song that we can post on YouTube that will surely go viral.

Finally, our last update is about the MS Walk that we are participating in this May. Chris and I, in addition to some of our friends and family members, will be walking 5 km to raise money for the Multiple Sclerosis Society of Canada. The MS Society is responsible for the funding of this MS trial and for other research funding in Canada. Last May, there was no way that Chris could walk 5km due to a severe relapse, and we are really excited that he will be able to participate.

We just wanted to post a link to our fundraising page to anyone that is interested in donating to the MS Society. It would really mean a lot to us if you can donate anything, and it will mean even more to the other 75,000 Canadians with MS.